“You never talk about Mal-o-Rally anymore,” Rachel said to me a couple of weeks ago. It was more a diagnosis than an accusation, and it certainly was not something I could deny. One of the things I’ve learned about myself over the course of Mal’s recovery is how I deal with my pain – I bottle it up. While I am certainly able to spout off cheery updates to the inquisitive friends and relatives who wonder how she is doing lately, I offer nothing beyond the basics. “Terrific,” “You’d never know she was sick,“ and “we’re optimistic for the future” have become my go-to phrases. Typically I am not pressed for more, so I don’t ever dive into the emotions of the family. I have been able to wall off conversations regarding fear, death, love or parenting, instead parsing them down into ten word blurbs of positivity. I have also become an expert at giving the thirty second synopsis of Mal’s cancer diagnosis, treatment and remission for those unfamiliar with the story. I can cruise through it without flinching, offering little more than the facts of the case and a bright outlook on our future.
The fact that I have simplified and detached myself from Mal’s brain cancer has never been more clear than in the past few days. Today is the one year anniversary of her diagnosis. One year out from what remains the worst day of my life. During my talk with Rachel regarding my reluctance to reminisce about our ordeal, she caught me a bit off guard. “I think you have forgotten the work you put into the blog, and how good it was for you,” she told me. I confess that my entries were a creative form of therapy for me. Rachel went on to tell me that she wanted to turn the blog posts into a book for Malorie, so that when she is older she will be able to more clearly understand what she (and we) had been through.
I agreed to log on to the site to enter one last post regarding the past several months since Mal completed radiation, but I was fairly unprepared for what I would be doing. The night that I logged on to read my previous posts was the first time I had been back on the site since the last post was written in April. I had not even checked the comments to that post. It was almost as if once Mal finished radiation and we had tidied up the business regarding the charity benefit, I turned my back on the situation. Of course, that was not the case for me. I never turned my back on it, but I certainly did hide it down in the depths of my being. That night I poured through the posts I had written, and I was placed back in a nightmare. I remembered the sleepless nights, the worry, the small pieces of hope that made us smile. It took me seven more days just to begin writing this post, as I was unsure if I’d have the heart to do it.
The simple fact is that our family is now, without a doubt, back to normal. For ninety-five percent of the time I am able to pretend that there was never anything wrong with Malorie, and I love that. She has gained back all the weight she lost and more, her energy is through the roof, and just as the doctors had promised, she has not lost any bit of her mental or physical capacities due to the brain cancer. The last few months have been an extended series of achievements for her: first day of pre-school, second time to the beach, third birthday, potty training, her first bike wreck, a family apple-picking trip. Her hair is all growing back and it is full of luscious brown curls when she wakes up in the morning. Mal finds the beauty in any situation, and makes a beautiful situation feel like it will overwhelm you. Last month she found a leaf on the ground that had five colors; green, yellow, orange, red and purple. I am not sure her feet hit the ground the rest of the day as she recounted the leaf to everyone she saw, including our dog. Not once during these past months did I find myself absorbed over the fact that the cancer likely would have robbed her of these opportunities, but I find the thought rolling through my head now.
Maybe that is why I subconsciously forced myself away from the blog. It, for me, has come to represent something I wanted to distance myself from; Malorie’s sickness. I still find myself celebrating every day for the gift that it is, but I do so from the frame of reference of a man thankful for life rather than a man who nearly lost his child. There is no rule saying that these two references can’t coexist, but for me they don’t.
Micah has continued to match Malorie’s achievements in lock-step. His capacity to learn and remember still amazes Rachel and me. The other day he reminded us that on the one occasion he was able to visit Mal at the hospital, she had a nurse named Rachel and said nurse was wearing green scrubs. He is a work of art full of frenetic energy and minute details – constantly changing and learning. I am scared that I will wake up one day and have missed the last of his childhood discoveries, as he runs through them so fast.
Rachel and I have done well too this past year. I got back into shape, began flying for the Navy Reserve again, and have resumed full duties at my civilian job. Rachel continues to amaze as a parent and a wife, persistently challenging the family to learn more, to do more, and to be more. All this lies at the crux of my difficulties in writing this entry – I simply don’t want to look back on a difficult time when I know there are so many other wonderful things happening out there.
The first time I ended this blog, which was originally intended to mark the kids’ birth and first year of life, I wrote something silly along the lines of “and they all lived happily ever after.” Then my daughter got cancer. The bad news is there is no happily ever after out there. But the good news is that there is so much wonder, so much love, so much goodness and so many experiences out there, that I wouldn’t want to be written off so easily. Many a person has said that it takes the night to make you appreciate the day more wholly, that it takes rain to make you revel in the sun. Our faith allowed us to take the shared experience as a family fighting a terminal disease, and turn it into a perspective from which we more fully enjoy the days we do have together. For that, I am forever thankful.
Thank you again to all the wonderful people who tolerate my less-than polished writing and unspecified delays to read this blog. Your care and love for our family truly did carry us through some dark, dark times. And to all the other loved ones who simply care for and love our family, thank you to them as well. All of you have helped us find our way in this life. My sincere hope is that your prayers and love will continue to shine on us for decades and decades of healthy scans to come for Mal. Thank you for your support, and thanks for reading.
Last night, Malorie told Rachel, “Mom, I didn’t like having a brain tumor.” And for all the words I’ve written, I’m not sure I could have said it any better. Happy One Year Out Day!